Chronic Pain and Children – the Story’s Not Much Better

Children suffer from pain, and generally medicine does not do a good job of treating them.

That’s the assessment Dr. Pradeep Chopra, who is an Assistant Professor in the Department of Medicine at the Brown Medical School and a nationally known pain management specialist.

It’s estimated that as many as 40% of children and adolescents complain of pain that occurs at least once weekly, and chronic pain affects at least 15%–20% of children. Just as chronic pain is more prevalent in women than men, girls report more pain than boys.

“Children deserve to be treated at least as well adults, and they generally are not,” Dr. Chopra told the National Pain Report recently. “Rather they are often blamed for their condition. It’s really a pretty sad state of affairs.”

The nation’s largest pain advocacy group has targeted pediatric pain as an issue.

“One of the major issues we see with pediatric pain is that it is undertreated and misdiagnosed,” said Paul Gileno who is Founder and President of the US Pain Foundation which will sponsor a pediatric pain camp in July and is planning a Take Control of Your Pain Event for later in the year.

When a child is complaining of pain, Dr. Chopra believes that treating physicians are not always listening the way they should to the patient.

“Oftentimes, they are told just do physical therapy and psychological treatment and you’ll get better, and then when they don’t get better they are blamed for their condition,” said Dr. Chopra

Chopra, who is Chairman of the Medical Advisory Board for the Coalition Against Pediatric Pain, says chronic pain can be so disabling that it can prevent a child from participating in normal age-appropriate activities, such as school, social events, and sports. It also can lead to isolation and depression as the child withdraws from friends and family. And, when a child suffers, the whole family suffers.

“If they don’t get better, the blame is often put on the kids which makes them sound like liars which is the worst thing you can do to a child,” said Dr. Chopra.

For doctors, Dr. Chopra’s prescription is simple: “when you see the child, and they tell you something, believe them.”

There are many, many sources of pain for children including cancer pain, complex regional pain syndrome, fibromyalgia, irritable bowel syndrome, juvenile arthritis and mitochondrial disease just to name a few.

“They are deserving of better treatment than they get,” said Chopra. “And it’s getting worse.”

The US Pain Foundation is recruiting more of what they call “pediatric pain warriors” who can share their stories to better educate young people, their parent and their doctors about the issue of pediatric pain.

Any child that complains of chronic pains, especially joint and muscle pains thought to be fibromyalgia, should be evaluated for hypermobile joints and Ehlers Danlos Syndrome.

3 years ago

Dave

Jean- I agree-both practitioners and parents are unwilling to take pain care much further. They are too attached to current practices. Its tragic that they will not overcome their attachments- and children pay too great a price for the failings of those they depend upon.

3 years ago

Jean Price

Dave…I agree that in a world of over testing and relying on those tests for diagnosis, the right test are often overlooked…probably because they are less mainstream. Alternative care practitioners often do some of these test, but I think many parents are so scared about getting expert advice they chose western medicine instead of a combination of the two. I’m afraid some of your comment is over my head, but the gist of it still points to a much needed overhaul in many arenas of patient care for children as well as adults. Unfortunately I don’t believe those in power see the need. Too bad the doctors like Dr. Oberg talked about and the doctor I knew who was so skilled at physical assessments aren’t around anymore to get us back on track.

3 years ago

Richard Oberg M.D.

The head of the department of medicine at my medical school when I was there, Gene Stollerman M.D., was best known for linking Streptococcal infection to rheumatic fever but was also the recipient of numerous awards and serving on the CDC, FDA, WHO, and others, and would have been appalled at the current state of affairs. He was a clinician extraordinaire who would pummel you on rounds for ordering unnecessary tests when physical findings and an accurate patient history gave you the answer (assuming you developed clinical skills he was trying to teach) almost all the time and you ordered only what you needed to help confirm and treat it. If you ordered tests you already knew the answer to you’d be held accountable. The rest of the time was spent explaining findings to the patient. He was truly an inspiration and everyone was humbled at his devotion to teaching and wealth of clinical expertise. He died in 2001. I have no idea how we’ve gotten to what we have now or why anyone would even try to defend it. Outside of acute hospital care interventions bearing a resemblance to battle field medicine evolving to save ever larger numbers of soldiers (hospital medicine at least at it’s best) our healthcare system is a shambles. Patients take years to get obvious diagnoses from any number of providers and what baffles me the most – that any random outreach provider who doesn’t know what constellations of signs/symptoms mean won’t consistently even refer folks higher up who often end up self-referring after doing their own homework and just getting an ‘OK’ from their provider for insurance pre-approval. I’m obviously not shy and have written any number of comments to physician site blogs and anyone would/should be outraged at the goofy, cryptic, non-professional, and often just plain angry physician responses to an appeal for simple reason and statements of plain fact anyone can look up. Maybe the worst of us troll those sites (I doubt it) but even more remarkable is after citing I’m seriously ill and as physician/patients neither my wife or I can get any consistently appropriate care in our area – what should that say to a lay person? Every patient who’s appropriate yet had bad encounters knows this: the very worst of us as physicians thinks they’re amazing, beyond reproach, and becomes and end unto themselves. Our profession is rife with personality disorders (narcissism would be high on the list), malcontents, and quite frankly people who’ve seemingly convinced themselves ‘the system’ is out to get them while the income machine never ceases. Don’t believe it. The same was said decades before I started practice when medicare was introduced and the AMA/physicians touted the end of the world. If you haven’t, look it up and see deja vu to what physicians say now. Radiologists shake their head at lunch at scores of needless CT or MRI scans done daily no one bothered to consult them on which simply weren’t indicated and… Read more »

3 years ago

Dave

@ Jean Price- Whether a child in pain receives care from a pcp, chiropractor, nutritionist, herbalist, neurologist, usui reiki energy healer, Manaka acupuncturist or Shipibo Shaman- one thing is for certain-their “treatments” of pain are not “the natural order of things”. Arguably, they are neither necessary or sufficient. Modern medicine – “laboratory medicine” often tries to assert that their tests, treatments, practices are necessary and “that there is no alternative”. And yes there are quite a few alternatives. For example- before giving someone GABA- isn’t it interesting doctors don’t provide a neurotransmitter test that measures levels of GABA. Before prescribing an opioid- no effort is made to determine endogenous opioid levels. Same is true with medical marijuana- no testing is done on endocannibinoids. But lets take it a step further- and we see a doctor doesn’t bother to find out if a person is getting enough tyrosine, cysteine, omega 3, Vitamin A, d magnesium, zinc in their diet or if the Il^ to IL10 ratio is off- or has an inborn error of metabolism that interferes with normal levels of these micronutrients. Lets say the child sees a neurologist for pain- again a neurotransmitter test, nutritional testing is unlikely- if a scan is done there is unlikely to be testing for neurodystrophic disafferentation dysponesis and for postural aspects of pain- and the neurologist- I dare say isn’t going to be bothered seeing if the child in pain is under or overmethylated.
The homeopath- despite some of them claiming it is a total system of care- of course forgot that Hanneman included heilkunst as treatment. The chiropractor- may not concern himself with the role of indoor pollution or emf exposure with regard to treating a child in pain.
One thing is sure- regardless of who treats a child in pain- their practices are not the natural order of things- but based on some rational decisionmaking- by fallible human beings. In addition it is clear their practices are uninformed by competing approaches of care. Additionally – it is only too clear that their is widespread disagreement as to how to treat chidren in pain. Finally, despite a variety of treatments for children in pain- pain care based on overconfidant practitioners who believe their approach is the natural order of things is all too little to be of much benefit to children in pain.
With regard to humanistic aspects of care- the behavior of practitioners is a choice-and they can chose to do better. Unfortunately, most practitioners are excessively attached to their practices and unwilling to loosen their grip on their moral principles and make pain care more humane.

3 years ago

Jean Price

Dave…as per usual, you bring up good points and have an insight into many of the “whys” of our problem, and potential solutions. With the leaps in technology, physicians rely more and more on tests results, not history’s and patient hands on exams. So the actual person behind the medical problem gets lost in the shuffle. I can’t count the number of times I’ve gone to an appointment and never been asked pertinent questions or physically examined. And I’m afraid it’s a lost art! I once knew a physician who said making a correct diagnosis is easy…the patient will tell you what it is if you listen and ask a few of the right questions. Treatment was also easy, he said. Patients can tell you what they need. Tests can confirm things, yet often lead doctors astray without the other information included which only the patient can supply. I do think the CDC and AMA and all the others who have demolished pain care need to be held accountable. I applaud your efforts to do this. Why else will they have an incentive to change? I’d like to see more effort in getting our stories out to the general public, avoiding some of the misleading headlines and pictures that put addiction in the forefront. We do need champions to help us…since most of us lack the stamina and the energy to initiate and follow through even when the opportunities are there. Thanks.

3 years ago

Dave

What I find interesting and difficult to understand is the denial of problems in pain care by the health care industry. It would seem “their” sleep isn’t troubled much by even poor pain care of infants in the NICU. I don’t know if it is due to their education, psychic numbing, wanting to feel good, inability to be compassionate or an excessive focus on symptoms, lab results and lack of focus on being humane.
And whether the public attempts to hold individual professionals more accountable for the pain care they provide or medical schools, the ACGME, professional organizations is not as important as wanting better pain care overall.
When I write to the CDC Commissioner- Im going to talk a bit about the collective failure of medicine and government to serve the public in pain care. Im going to hold the Commissioner accountable for his anti-democratic values and I will excoriate the basis for his certain plans regarding individuals pains. And his core expert group- a bunch of biobehavioralists who glorify in their own wisdom- since they have not done much exploring outside the limits of their paradigm- I will specify the fact they have turned over all too few stones to help people in pain.
If we wont stand up for our most vulnerable and dependent citizens- our children- what god are we as humans?

3 years ago

Jean Price

I believe there’s a long history of what we used to call doctors protecting other doctors by their silence. Actually it’s more doctors being unwilling to find fault, and a doctor once told me it’s because they all have feet of clay. But what about the AMA, and it’s functions? I thought they took the do no harm oath too. Yet their reluctance to put this in to action within their own ranks is appalling. And equally distressing is their silence when good doctors are robbed of their patients because of the present mindset on prescribing opioids, especially family practice and internal medicine doctors. And why so many doctors leaving practice or being arrested that people seem to think are great doctors? I suppose it stems from the all powerful politics, as usual…but isn’t it about time that stopped? In this war, the patients are the largest casualty numbers and possible the only fatalities! It’s bad enough we adults have to bear this, I’d like to seem them explain to a seven year old about why their pain can’t be treated effectively! I have this sinking feeling that ten years from now these comment will be the same. Changes will be ignored or ill suited to the problems, and politics and big business in health care will be alive and well. We won’t be!

3 years ago

DFW Mom

The basic problem is that we live in the Dark Ages of medicine. As much as they tout their scientific understanding, the fact is that medicine has not yet learned the answers to the medical problems that we are bringing to them. They are charlatans. Snake Oil Salesmen, touting mystic lore like the “mind body connections” and “prescribing” such cure-alls as talk therapy and exercise. It’s no better than going to a Psychic. And, not nearly as effective as going to an accupunturist or a masseuse, who actually does something that does, occasionally, have an ameliorating effect.

The really scary part, though, is that they are experimenting on our children, with drugs not tested in children, and drugs that are not approved for the conditions they are treating, and for which no one has any idea what the long term effects will be in a developing child. Drugs tested in foreign countries on people who are paid to be test subjects, and lie about being subjects in multiple trials at the same time, by drug companies that suppress test results that demonstrate their products don’t work..

3 years ago

DFW Mom

After three years of attending a “pain management clinic” for Primary Juvenile Fibromyalgia, my daughter was hooked up to a biofeedback machine one day when one of her Pains (it’s capitalized for a reason) hit, and the machine spiked off the chart. The doctor came in next, and said, “NOW we know that the pain you’ve been complaining about for the past three years is real.”

Words can’t really describe how we felt. My meek, gentle, mild-manner child said to me, later, “Mom, I wanted to slap her.” It wasn’t just her medical incompetence that was a problem. She was just a horrible human being. There should be some screening test, to eliminate doctors who are Incapable of listening to or believing their patients, from ever being allowed to be doctors.

Beyond that, fibromyalgia is so much more than pain. We would go in every visit, and “rate our pain on a scale of 1 to 10”. My daughter once said to me, “Every time I think it’s 10, I discover a new level of 10”. There are temperature control problems, circulation problems, fainting, eyes jumping, dermographia, overwhelming fatigue. We finally determined that pain was not the worst symptom, even when the pian was at a level that is common for advanced cancer patients. And, treating pain made other conditions worse. Besides, they never offered an effective treatment for the pain — just horrible, awful drugs that caused X-rated slasher dreams, and soul-killing depression. We’ll take the pain, please.

NO. The medical community does not treat kids with chronic pain well. In fact, I have had more success doing my own research, including gene scans, and treating her myself with supplements.

The night that I took her to the ER when she was literally frozen stiff with pain, and the ER said to us, “We don’t treat pain” and sent her home in the same condition, I knew I was on my own, and the next time she dropped to the ground, writhing in pain, I knew from past experience that I was on my own. It’s a lonely feeling, but since that time, I have learned that there are alternatives to a failed medical system. Sadly, those of us with children in chronic pain have no choice but to discover those alternatives for ourselves.

3 years ago

Richard Oberg M.D.

Dave again is absolutely correct. I’ve frankly never understood the notion of ‘we should this’ or ‘we that’ used in any medical/professional context. There is no ‘we’ and every physician does whatever they want to – I can’t express this strongly enough.

There will never be a time when all physicians act in some concerted manner beneficial to any particular patient outside of their own biases, lack of knowledge, lack of curiosity, or lack of empathy (the latter we’re all presumed to have which is nonsense). Just because one physician, often labeled an expert like Dr. Chopra, makes a statement everyone should be doing as standard of care, doesn’t at all mean it will get done – even by a majority of physicians in whatever specialty they’re in. The few that will are considered outliers.

And it’s not because any given patient hasn’t seen any number of physicians – too often they just didn’t get treated appropriately yet every physician was paid for their visit, the often repeated testing for no reason, and frankly, incompetence. Some in our profession, who may or may not be better than average, will howl at my comments because a majority of physicians don’t like criticism and like to ‘project’ how they’re better which is irrelevant to the discussion since they don’t control anyone else and only speak for themselves.

We have a very poor to non-existent physician monitoring system. Is medical malpractice due to a really bad outcome considered monitoring? Online patient feedback is considered bad and there’s a concerted effort to eliminate it. I know many highly regarded physicians who would personally never see (as a patient) any large numbers of other practicing physicians because they think they’re substandard. They’ll never shout it into a crowd though and we physicians are supposed to act as if we’re all united.

I know a pair of them who are united – as advocates for pain patients and it’d be great to see many more.

I find this to be accurate. My child has been told that her pain is real but she just needs to suck it up and push through. While I think that’s great in theory, it doesn’t always work. Especially since she’s been spitting up blood for 15 months and no one can figure out why. Last month, she had to have a lumbar puncture and had an LP headache for over a week. We were told by the doctor that she has migraines and pain issues so she’d be more prone to headaches. They didn’t blood patch her until the eleventh day. My daughter was in agony the entire time. They wouldn’t do that to an adult. D

3 years ago

Jean Price

You have to think it’s a screwed up mindset in general that would allow children to suffer! Deplorable! I’m glad there is a focus on this. In health care, there are three types of care models, all designed to address patient’s health conditions. Too many times, chronic pain is treated with the first one, an “acute care model”. This is where “You are broken! I’m the expert, so I can find the problem and fix you.” In this way of addressing health issues, if the patient doesn’t improve, THEY are now considered the problem, since it’s unfathomable for the expert to fail at their task. This model does not account for any life changes from illness, or long term conditions…so there are actually very few cases where it can be used appropriately. Plus, when it’s hard to find the causative problem, doctors often just label the patient with an incorrect diagnosis, which of course doesn’t respond to the treatments since it’s not what’s wrong! Chronic pain is more the second model, (or should be!), where health care is directed at treatment and teaching. “You have had a life change in your health. It can’t be fixed but you can learn ways to help and to adjust and be safe .” The professional’s job then is to teach and support… realizing each patient has different issues to focus on. The doctor supports the patient as he or she learns to live with the health changes and adapt to a new way of life. Heart attacks fit in this model, too. The third and last model is the one for hospice. “I will treat you in this last phase of your life, not abandon you, and walk beside you.” Since the professional can’t fix or teach how to adapt, their role becomes one of being a peer. There are no right or wrong ways of dying, so the doctor allows the patient to be in charge of most of the plan. Pain is the body’s way of saying something is wrong. When this isn’t addressed in children (or adults), the consequences can be horrific. In chronic pain, our body keeps telling us something is wrong…yet because it’s usually not a fixable problem…we are faced with trying to turn down the volume and ignore it and treat the symptom. But there is a alway a caution and a risk, since many other illnesses have the same type of pain. Because of chronic back pain, I went five months before a total kidney occlusion was diagnosed…even though I said the pain was different. And the bad thing is, even with my history…this happened several years later and still took five months to zero in on!! For children, five months can make a huge difference when pain is undiagnosed, let alone untreated. Really, isn’t this child abuse? The welfare and health of the child is at stake. Each day in untreated pain is a day stolen from their life! I never cease to be amazed… Read more »

3 years ago

Dave

All the more reason why medicine needs to be overhauled- the cruel and unjustifiable treatment of children, the ever rising costs, the indifference to public opinion, the phony research, the innovation gap- all bespeak of a profession that is too far removed from the public good. And its not like medicine is unaware of the issues- they simply don’t care to change as they believe the public is not qualified to have an opinion about their services. In addition they believe their medicine is the best it could possibly be.So unless the public annoys government to change medicine there is little hope of progress.